I Cannot Stand On My Feet. How Many Feel So Alone? | MySpondylitisTeam

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I Cannot Stand On My Feet. How Many Feel So Alone?
A MySpondylitisTeam Member asked a question 💭

I cannot stand on my feet an longer than 15-20 minutes before they are absolutely killing me. My diagnosis are AS, Fibromyalgia, sjogrens, Raynauds, and neuropathy. I hear how people describe neuropathy as pins and needles but I don’t have that. I never know how to explain it but my feet just hurt and the longer I’m on them the more swollen and red and hot they become. I have to literally plan each day around my feet, meaning I have to decide what hideous shoes to wear for the day, to making… read more

posted August 9, 2019
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A MySpondylitisTeam Member

Yes. I have felt very much alone for 20 years. But sometimes is WORSE especialky if my pain is so bad. And you talk to PEOPLE and say you have to keep moving or setting and laying around will make you weak. They don't understand and I just soon not talk to them because they know nothing.but this team is a blessing the people on here really understand. GOD BLESS you.

posted November 10, 2019
A MySpondylitisTeam Member

You have described perfectly how my feet have been for over 40 years! I started with a burning sensation in the ball of my feet if I wore high heels at 17/18, which went away if I wore my Scholls (remember those?!) for a day or so. Then as I grew older my entire sole would burn like hell at night, not painful to walk on like the ball of foot pain, but still there and my GP just shrugged, refusing to refer me, even though I had other symptoms, he said they weren't related and he had no idea what was causing it...so that was that! But, where mine differs is that they're not red and swollen. However, I know someone whose feet do swell and are red, my cousin's daughter and she was also diagnosed with Sjogrens about 5 years ago, a part of that is the Raynauds which affects the hands and feet, causing symptoms as you describe, so not caused by the neuropathy, but the Sjogrens and Raynauds. Your doctor should be able to refer you for special socks and gloves, as well as treatments which will help to ease the pain.
As for feeling alone, not really, even though like you I have a small family, just me, my daughters, one son-in-law, a grandson and an estranged brother, but I do have an excellent friends support work and adopted family. I don't however, get invited to much these days because I either don't feel that I can go and end up cancelling plans or have to leave early due to pain. Those who know me well understand and anyone else can just go jump as far as I'm concerned.
Could work cut your hours or could you work from home on so many days a week? Job share maybe? A friend of ours we class as family has Ankylosing Spondylitis (she was diagnosed at 11 and is now 34) and her employers have accommodated her by arranging job share and she works three days 9-5. I know it's hard to motivate yourself when you're in pain and exhausted, but don't let it affect your relationship with your husband. On days where he wants to do something, explain that you need a power nap or a 10 minute break where you sit and maybe meditate, relaxing and deep breathing, then agree to go armed with painkillers and anything to help ease the pain. I know it's like giving in, but how about a mobility scooter? I finally admitted that I couldn't do walking around anymore and have now begun to look into getting one. If it helps to get you out of the house, why not?

posted August 9, 2019
A MySpondylitisTeam Member

My feet hurt and my knees so bad its really hard to walk around and exercise. I've gained weight and that makes it even harder to get around. I'm stuck at home most the time. Makes me feel useless and depressed. I wish there was something else I could do besides pain medication. I use ice packs and heating pad. It's very frustrating.

posted June 12, 2023
A MySpondylitisTeam Member

After reading your post it sounds to me like it's the raynaunds that is causing the pain in your feet, I have this too in my feet and my feet are ice cold no matter what I wear on them. I sleep in thick fur lined bed socks and still my feet are painful, it's to do with the blood vessels in the feet. I had worn slipper boots in the house all day but when I got into bed my husband said my feet felt like they had been in the freezer and made him feel like they were burning him where they touched his skin. I can feel the temperature difference which starts just above my ankle and is freezing cold from there down above that area they feel normal and fairly warm. I am sorry you feel so alone but you have people on here now who totally understand where you're coming from and go through much the same problems as you do. So you are not alone with this anymore. You need to explain to your husband and family just how you feel, they will not be able to understand if you don't tell them, unfortunately they can't feel your pain, if others could feel what we feel they would be way more understanding of what we have to deal with, especially doctors who often have no sympathy at all. X

posted January 5, 2020
A MySpondylitisTeam Member

Ice packs. I have neuropathy and get numbness, tingling, burning, shooting, stabbing pain and just plain deep ache and when the burning pain gets to be too much, I set two bags of ice on the floor and put my feet on them.

posted September 6, 2019

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